QUESTIONS (AND ANSWERS) FOR YOUNG PEOPLE FACING NEUROBLASTOMA THE ADVENTURES SKIVOLO OF LITTLE BY DAVID NEWTON ILLUSTRATED BY SIMON SHAW

Transcription

1 QUESTIONS (AND ANSWERS) FOR YOUNG PEOPLE FACING NEUROBLASTOMA THE ADVENTURES OF LITTLE SKIVOLO BY DAVID NEWTON ILLUSTRATED BY SIMON SHAW

2 Hello! I m Skivolo!

3 Skivolo is a red panda. He is 3 and likes to ask questions.

4 Lots and lots of questions...

5 Why can t my eyes see inside of me? Why do dogs stick their tongues out? Do crabs have eyebrows? What does paper taste like? What s your secondfavorite truck? Skivolo s mommy Patrino and daddy Patro do their best to answer every question Skivolo asks. Even the tough ones.

6 Skivolo asked, Why am I sick?

7 You re sick, began Patrino, because your body is fighting CANCER, little one. A type of cancer called NEUROBLASTOMA (new row blas to ma). What s cancer? replied Skivolo.

8 Patro explained: Your body is made up of billions of teeny tiny pieces called CELLS. When these healthy cells grow, they make more little cells. But sometimes, the cells make mistakes and create bad cells called cancer cells. When there are too many cancer cells inside your body, they make lumps in your tummy or your back. Some lumps and bumps in your body are okay. But the ones caused by cancer can hurt and make you sick.

9 Did I get cancer because I was bad? asked Skivolo. Patro shook his head. Never, my little tumbleweed. You are a good little red panda. It is not your fault you got sick.

10 Jenu is Skivolo s older sister. Sometimes she plays ball with Skivolo. But she also makes Skivolo play silly Jenu games that aren t very much fun. One time she pinched Skivolo. Did Skivolo get cancer because I was naughty to him? asked Jenu. Never, my little whirlwind, replied Patrino. It is not your fault Skivolo is sick. You did nothing wrong.

11 Jenu frowned, Then how come he won t play with me anymore? It s not that he doesn t want to, answered Patrino. He s just very, very tired because his body is fighting a sickness called cancer. When he s better, he ll be excited to play with you.

12 Skivolo and his family visit the hospital to see Dr Kono and Nurse Felicia. Why do you wear a white coat? asked Skivolo. Dr Kono looked down at his coat and answered, I wear this coat so that everyone knows I m a doctor, and I am here to help you. Skivolo looked at Nurse Felicia and asked, Where s your white coat? I m a nurse, she replied. I do different jobs than the doctor, so I have my own outfit.

13 Dr Kono explained to Skivolo, When you come to the hospital, we will do some tests that will help us figure out exactly where the cancer is. We will test your urine That means pee! interrupted Jenu. and your blood, continued Dr Kono. Will it hurt? asked Skivolo. It will feel like a poke, Nurse Felicia assured him.

14 Other tests use machines to look inside your body. The X-RAY machine is like a big camera that takes pictures of your bones. The ULTRASOUND gives us a picture of what it looks like in your belly. The CT SCAN is a cool machine you lie in that makes you feel like you re in a spaceship. It takes pictures of your belly and chest. The PET SCAN is like another spaceship. It can make color pictures of the inside of your body. The MRI also looks like a spaceship. This machine takes pictures of things like your brain and spine. It makes loud noises, like an outer space blast-off.

15 The BONE SCAN shows us the inside of your bones. An MIBG SCAN helps us to see your cells. They re a little scary, said Skivolo. The good news is, most of these tests won t hurt at all, replied Nurse Felicia. And someone who loves you, like Mommy or Daddy, will be close by for every one, my little explorer, Patro said as he placed an arm around Skivolo. I want to see the inside of me, Skivolo said.

16 We ll also put something called a CENTRAL PORT CATHETER just under your skin. The port, or line, stays with you all the time during your treatments, explained Dr Kono. What s that for? asked Skivolo. The port lets us take some of your blood for tests without poking you with a needle. It s also where we give you some of your medicine during treatments.

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19 CHEMOTHERAPY (kee mo ther uh pee) is special medicine that gets rid of cancer cells. Chemotherapy can also get rid of some good cells, too, like your hair, said Nurse Felicia. That s why people with cancer often lose their hair. Skivolo touched his head and asked, Will my hair come back? Yes, Nurse Felicia replied. When you finish chemotherapy, the good cells come back, and so will your hair.

20 SURGERY, said Dr Kono, is when doctors make a small cut on your skin, then remove the cancer lumps from your body. When you have surgery, you have to stay in the hospital. Will it hurt? asked Skivolo.

21 We ll give you medicine that will keep you asleep during surgery. It may hurt a little after you wake up, but Nurse Felicia will give you medicine to make the pain go away, answered Dr Kono. And Mommy or Daddy will be there to give you hugs and to stay with you in the hospital, Patrino added.

22 STEM CELLS are good cells that help your body grow healthy. Chemotherapy removes some of your stem cells. So doctors will take some of these cells and save them, so they can be given back to you later to help you get strong and healthy again. When do I get my stem cells back? asked Skivolo. Dr Kono replied, After chemotherapy and other treatments are all finished, we ll give you back your stem cells to help your body get better.

23 During this part of your treatment, you will stay in a very special room in the hospital that helps protect you from getting sick, like with a cold or flu, said Nurse Felicia. Does everyone have to wear those funny clothes, like a mask? asked Skivolo. Yes, they do, said Nurse Felicia, to protect you!

24 RADIATION (ray dee ay shun) THERAPY is from a special machine that zaps cancer cells. Does radiation therapy hurt? asked Skivolo.

25 No, it doesn t, Skivolo, answered Nurse Felicia. It s very fast, and we give you medicine to help you sleep during it. And we ll bring some of your favorite toys from home that you can play with when you wake up, added Patrino.

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27 ANTIBODY THERAPY uses special medicines that help your body fight cancer cells. When you get antibody therapy, you have to stay in the hospital, but Mommy or Daddy will stay with you. Can I play with other kids? asked Skivolo. Yes, you can, Skivolo! If you re feeling up to it, you re free to play all the games you like with other kids, replied Dr Kono. Plus, you can have your friends from home come and visit you too.

28 Does antibody therapy hurt? asked Skivolo. Yes it can, Skivolo, answered Dr Kono. It can also make you feel itchy, or give you a fever, or even make your tummy hurt. But we ll give you medicine to help make the pain go away. That s why it s important to always tell us when it hurts. Why does it have to hurt? Skivolo asked. Dr Kono replied, It hurts because antibody therapy is medicine that helps your body fight the cancer cells, Skivolo. And fights can hurt.

29 Skivolo did a karate kick in the air and yelled,

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31 Why are there so many medicines for cancer? Cancer is sneaky, Skivolo, began Dr Kono. It tries to hide inside you. We use all these different kinds of medicine to try to get all the cancer cells. Get out, cancer! said Skivolo.

32 Will I have to live in the hospital? asked Skivolo. Patrino looked at Skivolo and smiled. No, my little sunbeam. You will only be here for a little while. Then, when your treatments are done, we will all go back home.

33 And we will have your favorite treat to celebrate, said Patro. BAMBOO! YUM!

34 Skivolo is happy he has so many people who love him and want to help him get better. But he has one more question.

35 Get better, Skivolo! Can I please have a treat now?

36 WHAT DOES THAT WORD MEAN? ANTIBODY THERAPY Medicines that help your body find and kill cancer cells. BONE SCAN A special type of test that helps doctors look for damage in your bones. CANCER Cancer is a disease that happens when the body makes cells that are sick. These cells can grow very quickly. Cancer can spread to different parts of the body. CELLS The smallest piece of you. All these pieces together make you who you are. CHEMOTHERAPY Special medicines to treat cancer. CT SCAN (also called a CAT SCAN) An X-ray machine that looks like a spaceship and takes many pictures all around your belly and chest. MIBG SCAN A test that helps doctors find cancer in the body. MRI A special scanner that uses a powerful magnet to take very detailed pictures of the brain and spine. MRIs can be very loud, but they don t hurt. NEUROBLASTOMA A kind of cancer that mostly affects young children. ONCOLOGIST A doctor who treats patients with cancer. Oncologists who treat kids with cancer are called pediatric oncologists.

37 PEDIATRIC ONCOLOGY NURSE A person specially trained to give care to children with cancer. They are the ones who will give you medicine while you are in the hospital. PET SCAN A spaceship-like machine that takes color pictures of the inside of your body. RADIATION THERAPY A type of cancer treatment that uses a beam of energy from a machine to kill cancer cells. REMISSION When cancer symptoms go away completely. SIDE EFFECTS The body sometimes reacts to medicine or other treatments. In cancer treatment, some of these may include feeling very tired or losing your hair. STEM CELL TRANSPLANT A treatment that uses your body s stem cells to help make you stronger. STEM CELLS The baby cells that can grow to become blood cells in your body. TUMOR Cancer cells growing together in a mass or lump inside your body. ULTRASOUND A machine that takes pictures in smaller areas of your body, especially in your belly. X-RAY MACHINE A machine used to take special pictures of the bones inside of your body.

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40 Every child has questions about being sick, and Skivolo is no different. THE BIG ADVENTURES OF LITTLE SKIVOLO follows a very curious red panda as he discovers why he feels bad, what can be done to help, and who will take care of him along the way United Therapeutics Corporation. All rights reserved. US/DS/0114 Printed in USA.